Participant Engagement Unit

参与者参与单元

• 批准号: 10237261
• 负责人: Corrie Ann Painter
• 金额: $ 106.92万
• 依托单位: BROAD INSTITUTE, INC.
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-01 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10237261
• 关键词: Adult; Age; Archives; Behavioral Research; Behavioral Sciences; Blood; Caregivers; Caring; Child; Childhood; Clinical; Clinical Data; Clinical Research; Clinical Trials; Communication; Communities; Computational Biology; Computer Analysis; Consent; Dana-Farber Cancer Institute; Data; Data Aggregation; Data Reporting; Data Science; Data Set; Databases; Development; Diagnostic Procedure; Disease; Enrollment; Ensure; Ethnic Origin; Failure; Gender; Genome; Genomics; Geographic Locations; Geography; Goals; Individual; Infrastructure; Institutes; Intervention; Joints; Knowledge; Lead; Leadership; Malignant Neoplasms; Medical Records; Molecular; Morbidity - disease rate; Mutation; Participant; Patient Recruitments; Patients; Prevention strategy; Process; Race; Research; Research Design; Research Personnel; Resistance; Rural Minority; Saliva; Smooth Muscle; Specimen; Survival Rate; Time; Tissue Sample; Translational Research; Tumor Tissue; United States; anticancer research; bone; clinical database; data archive; data de-identification; design; empowered; experience; genome sequencing; genomic data; improved; leiomyosarcoma; literacy; loved ones; member; metastatic process; novel; operation; osteosarcoma; outreach; patient engagement; patient population; pediatric patients; rare cancer; repository; research study; sarcoma; shared database; standard of care; success; targeted treatment; treatment strategy; tumor; tumor DNA; web site

Osteosarcoma (OS) and leiomyosarcoma (LMS) are exceedingly rare cancers, both subtypes of sarcoma, that arise in bone and smooth muscle respectively. There has been a failure to improve survival rates or decrease treatment-related morbidity in OS/LMS due to insufficient characterization of the genomic landscape, resulting in a lack of targeted therapeutic approaches, diagnostic methods, and preventive strategies. There is an urgent need for a large, shared database of clinical and genomic data in OS and LMS. Yet, because of the rarity of these tumor types as well as other challenges in patient recruitment and the genomic characterization of these tumors, to date it has been difficult to generate this data. The overarching goal of this proposal is to engage adult and pediatric participants with OS and LMS as partners to generate a shared database of clinical, genomic, molecular, and patient-reported data. This should accelerate discoveries that drive novel treatment strategies, new clinical trials, and new standards of care. The Count Me In PE-CGS U2C Research Center will leverage our experience in patient engagement, genome characterization, computational analysis, and behavioral research to create and launch two patient-partnered projects to generate this clinicogenomic data. We will build two websites with patients in the OS and LMS communities—the Osteosarcoma Project (OSproject) and the Leiomyosarcoma Project (LMSproject)—and consent 3,000 patients over the course of the study. We will collect medical records, patient-reported data, archival tumor tissue samples, and saliva and blood for genomic analysis. We will generate clinically annotated genomic data from at least 750 tumor specimens, 500 circulating tumor DNA specimens, and corresponding germline specimens and share the de-identified data widely. At the same time, we will study and optimize the approach to patient engagement in cancer research, particularly among rural and minority participants and participants across a range of literacy levels, ages, and stages in development. To accomplish these goals, we will build on a well-established interdisciplinary team from the Broad Institute and Dana-Farber Cancer Institute with members who have pioneered these approaches. Our leadership (Wagle, Janeway) and Units are comprised of experts in patient-partnered cancer research (Wagle, Painter), sarcoma clinical and translational research (Janeway, George, Crompton, Raut), genome characterization, analysis, and clinical interpretation (Gabriel, Getz, Van Allen, Wagle, Janeway), computational biology/data science (Getz, Van Allen, Philippakis), and behavioral science (Mack, Rebbeck). Our Center will uncover the key clinicogenomic features of OS/LMS, integrate them into a single comprehensive database with a goal of accelerating research and improving the lives of these patients. In doing so, we also aim to present a general approach to patient-partnered research that can be disseminated broadly and applied to other tumors types and patient communities.

骨肉瘤（OS）和平滑肌肉瘤（LMS）是非常罕见的癌症，都是肉瘤的亚型。